Caregiving: A Journey with a Million Losses

Until I was a caregiver I did not realize how many losses there are in the process. Caring for my husband with naspharyngeal cancer for 42 months meant an unending series of losses over the years.

Loss of Identity

David suddenly began calling me his #1 caregiver. I know he meant it as a compliment, recognition of all I was doing. However, before his illness he called me the “love of his life” and I saw myself as his wife, a title I enjoyed much more. So many times I indeed felt like a caregiver rather than a wife or partner as I needed to encourage, persuade and even scold him in an effort to keep him safe and comfortable. How many times I missed being his partner rather than caregiver.

Loss of Intimacy

Eventually intimacy changes, expressions of love change as fatigue when side effects take over the physical body. It’s important we find new ways to express our love and seek new ways to be intimate. While these are enduring and special, there is a loss of the traditional and special ways a couple has shown affection throughout their relationship.

Loss of Physical Health

While David lost his physical health, so did I. As he slowed, so did I. As he became less active, I followed as I did not want to do things without him. Our love of hiking and even walking the dog through the neighborhood are things I miss to this day.

Loss of Activities

We loved to dance. Once his chemotherapy took the balance and feeling in his feet my dance partner found that dancing was very challenging and frustrating. Rather than guiding me across the floor we struggled to even move in one place.

Loss of Privacy

Eventually, to keep David at home until the end I had to realize that I could not care for him alone. First was his ability to shower and my ability to assist and in the end it took three of us to care for him. For the last several days we were not to be alone together until my final words to him. While I appreciated the help and even the companionship as he could no longer communicate, our privacy was a tremendous loss.

Loss of Communication

I think the worse loss for me was his loss of communication in the final weeks. We talked together for hours, discussing the world events, making decisions together, dreaming together, solving problems together. It seemed a slow loss as I began screening what I discussed with him so as to save his energy and protect his feelings. I lost my best friend as well as my husband.

Learning to manage the losses

Perhaps all the losses help prepare us for the final loss, I have not yet decided. Slowly one learns to anticipate and expect the losses, very few taking me by surprise. They are however cumulative and they continue into bereavement. I have heard other widows talk about how little people understand the fact that when your spouse dies everything in your life changes. It is not just the loss of them but also the loss of your family as you know it, financial loss, role changes, decision burden and so much more. One day at a time, giving myself permission to grieve the losses, and finding new things to replace or moderate the loss was my only answer.

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Published by Debra Parker Oliver

I am the Paul Revare Family Professor of Family Medicine in the School of Medicine, at the University of Missouri. I have a Masters of Social Work and PhD in Rural Sociology from the University of Missouri. I was a hospice social worker and administrator in three hospice programs for a total of more than 20 years. After getting my doctorate I continued my commitment to the improvement of hospice care through research with more than 170 peer -reviewed articles related to palliative and hospice care.
In an effort to teach and advocate for those facing cancer and terminal illness my husband David and I created a blog to share our journey with others. We received the Project Death in America Community Education Award from American Academy of Hospice and Palliative Medicine care two weeks before David passed away. I am now committed to continuing sharing my journey through grief and bereavement.
View all posts by Debra Parker Oliver